Dwayne Wilson, of Irvine, California, was diagnosed with late-onset Pompe disease in November 2018 at 50 years old. He describes the various ways he squeezes nutrients important to Pompe into meals.

I would have to say, first off, I watched a video between a nutritionist and a Pompe patient talking about nutrition and how, you know, protein is vital for our nutrition for Pompe patients that have more protein, and that eggs are really a good source of protein and amino acids. And amino acids are the building blocks for protein.

And I started supplementing my diet with a lot of amino acids. So when I wake up in the morning, I take some amino acid pills. And then right before I have breakfast, I have my multivitamins that have amino acids in them — beta-alanine, other amino acids that are good for muscle recovery.

As a Pompe patient, the muscles get more fatigued. So anything that I feel I can do to help my muscles recover quicker and sooner so that I can do my daily work still.

I add protein powder into ice-blended coffees. I don’t drink hot coffee, but I like cold ice coffees. And I need a little bit of caffeine from the coffee, but I also want to have some protein from it. So I’ll add protein into a nice cup of coffee to have at my breakfast.

After work at the end of the day, I’ll make myself a drink, like a slushie with the other amino acid powders, call them BCAA (branch chain amino acids) and EAA (essential amino acids). And I add those to a drink to have sipped through the evening.

You know, they promote them for muscle recovery, for like bodybuilders and strength trainers. But when you have, you know, a rare muscle weakness disease — that your muscles are just deteriorating just by your normal daily activity — I feel like getting, you know, the amino acids as much as possible in my body will, you know, help me feel better and help my muscles feel better. So I feel like that has a long-term benefit on my body with Pompe.